Mackenzie's Grandpa, My Dad, Archie Lambert Dec. 29,1936 to April 16, 2008 A Life Well Lived.

Mackenzie's Grandpa, my Dad has always been bigger than life to me. There is no one living whose approval I have coveted more, or whose opinion I've valued more highly.
My earliest memories of Dad were of him reading to me. I’d pull a book off the shelf and crawl up in his lap after supper, and he would read until I fell asleep or until I grew tired of it, and wanted to wrestle. To this day I love reading, though I have never been a fast reader, I attribute my love for literature to those early nights on my fathers lap listening to him read me to sleep.
Growing up I never remember a time when I wasn’t proud of dad. In 1967, I was in first grade and we lived in Richardson, Texas. Dad was a project manager at Texas Instruments for a research and design team. Nelson Tubbs, a boy I remember as being irritating, lived across the street from us. Nelson derived a great amount of pleasure from standing on the sidewalk in front of his home, yelling across the street at me, “My daddy works at T.I.!”
To which I’d reply, “Well, my daddy works at T.I. too, and he’s your daddy’s boss!”
A statement that to this day I’m not sure was true, but I wanted it to be.
In my senior year at Russellville High School, I wrote a poem about “the plain man” who was my hero, I was still amazed and in awe of him, he made everything he did look so simple. He lived a consistently circumspect life that won the admiration and respect of all who knew him. He lived for his God by living for his fellow man, whether it was a student, or a widowed neighbor, a colleague or a hitch-hiker. He blessed others and was blessed himself. He balanced frugality and generosity with nimble dexterity, and never forgot that all gifts come from our Heavenly Father. He lived a life that was filled with Joy regardless of the circumstances. He understood the value of work. When I was a teenager, a man from the church needed his peas picked and offered dad half of all the peas we could pick. I remember dad “letting” us kids pick purple hull peas in “Uncle” Sam Cochran’s pea patch near Hickytown, Arkansas to help this man out, and reduce the cost of feeding the three of us. Dad kept a garden and always planted lots of weeds so we’d have something to do when we were bored in the summer. There was no sympathy where work was concerned, it was a gift and being able to work was a privilege.
Once, after I was grown and on my own, I called and told him, “Pop, they have me working six 12 hour days in a row before I get a day off!”
“Last time I checked,” he answered drolly, “twelve hours is only a half a day.”
Then he chuckled and told me to be thankful for work.
He remained interested in my welfare through the years, never missing a chance to inquire as to how I was doing when we talked on the phone. When I would begin to answer, he'd interrupt and say, "That’s nice, but how are you doing 'spiritually'?"
During a period of national recession around 1990, I spent the greater part of a year unemployed, and looking for work. I’d used all my savings to keep my mortgage paid and then slowly maxed out each of my credit cards trying to float till I could find work. It seemed I was either under or over qualified for everything. I called Dad one day just to unload, and secretly hoping that he might offer a handout to tide me over till I was solvent. “Pop, I’m not sure what I am going to do,” I told him, “I have sold everything that I can afford to do without, but the bills don’t stop.”
“Son,” my dad said knowingly to me, “it’s instinctive for a father to want to help his son, and nothing would give me greater pleasure than to write you out a check and help you out of this mess, but son, I’ve been praying for you. I’ve been praying that whatever it takes for God to get through to you, whatever it takes for you to get closer to Him, that whatever it takes, He’d do it. So as much as I’d like to help you out, I’m afraid that if I did, I might be getting in God’s way on something I asked Him to do. You’ll get through this, and you’ll be stronger, just remember that your source isn’t money, or a job, or your old dad. Jesus is your source, and He’s waiting for you.”
I did come through that episode stronger, and with a renewed realization of God’s power. Ever after that time, whenever things have been the least bit rough I’ve called dad to jokingly remind him that it’s OK; I know Jesus is my source, so he can stop praying.
When Michelle and I were married Dad was thrilled. He had told me after I’d introduced them that he liked her. “She’s beautiful, AND a conservative! You’d better hold onto her!” he’d advised. And it was Dad, who first advised four years ago, after our daughter Mackenzie went to heaven, “Comfort Michelle, love her like Christ loved the church, find a reason to rejoice, don’t let your loss defeat you.” Over the past four years God’s been teaching me what Dad meant. Joy is a choice. Because there is Jesus, there is always a reason to rejoice. I miss you Pop, but I am rejoicing that you’ve got your reward, I am rejoicing that you are with Christ, reunited with your Dad and Mom, together with my sister, Willena, and your grand-daughter Mackenzie. Thanks dad, for never compromising, for always being an example, and for never giving up on us. Look back here Pop, over your shoulder. We’re running to meet you, and in a little while, in a blink,- we will be together again,- forever.

Grace for the Moment

Everyone at the hospital had an interest in Mackenzie. Everyone was excited! Everyone knew we were there, and what we were there for. When you work in a health care setting, you realize that no matter what the government says, a patients right to privacy (as outlined in HIPPA) doesn't apply to patients who work at your facility. We knew that we could be all hush hush and secretive, and keep everyone on pins and needles, but these people were friends, and coworkers who had supported us and worked with us. Some of them were from our church, and had prayed for us, and ministered to us. We couldn't keep them in the dark. These were people we loved.

So they knew every time I left the suite. Whether I was running home quick to feed the animals, or heading for the vending machine to get a soft drink, everyone I encountered that day wanted to know, "Is she here yet? How is she? Keep me posted!"
It's as close to celebrity as I will ever be, and it's nice. That is, it was nice. Right up until I had news to share.

I was walking back to our suite with the Merck Manual in my hand, still numb and in shock from what I had just learned about my new baby girl's prognosis, when I was approached by coworkers from an ancillary department who greeted me with excited smiles wanting to know if the baby had arrived, what was the gender, how much did she weigh, and wasn't this soooo exciting.

I paused, for what to me seemed like a very long time, as I tried to digest what I had just learned. I prayed for an answer. I considered how I should answer, I considered pretending I didn't hear or see them, I considered how it was supposed to be, with pink bubblegum cigars, and congratulations, and from somewhere outside of me I suddenly heard my voice answering them. "Yes, Mackenzie is here, she's a little girl, and very tiny, three pounds seven ounces, and yes, it is exciting, and please, could you keep her in your prayers?"

That was the rest of my day. God gave me enough grace to get through that day, it was, at that time, the happiest, and the saddest day of my life.He knew what I needed He knew how much, and He knew when. Just enough grace, at just the right moment.

Trisomy 18

What is Trisomy 18?

Trisomy literally translates "three bodies". The term is used to refer to chromosomes that don't develop quite like chromosomes ordinarily do.

Humans usually have 23 pairs of chromosomes, with two sex chromosomes that decide gender and 44 chromosomes that dictate other factors, such as growth and function. A chromosome disorder is caused by an alteration in the number or genetic structure of chromosomes. Trisomy occurs when the affected person has 47 chromosomes instead of 46. One of the 23 chromosome positions has 3 chromosomes rather than the usual pair. The 3 most common trisomies occur at the 21st position, Trisomy 21, Down's Syndrome, the 18th position, Trisomy 18, Edward's Syndrome, and the 13th position, Trisomy 13, or Patau Syndrome.


Trisomy 18, Edward's Syndrome occurs in one out of every 3 to 6 thousand live births. Characteristis often include:

Defects of the kidneys, ureters, heart, lungs and diaphragm.
Gastrointestinal malformations.
Cleft lip or cleft palate.
Small skull (microcephaly).
Malformations of the hands and feet - including missing thumbs, club feet and webbing between the fingers and toes (syndactyly).
Neural tube defect, where the spinal cord, meninges and blood vessels protrude through a gap in the vertebrae (myelomeningocele).

Signs during pregnancy that there may be a problem may include:

Too much amniotic fluid surrounding the baby (polyhydramnios).
Only one umbilical cord artery.
A smaller than expected placenta.
The baby is small for its gestational age.
The baby is less active than expected.
Congenital defects, including cleft palate or heart abnormalities, are picked up during ultrasound scans.


I had covered this material during my obstetrics rotation in nursing school. I think the instructor may have spent 5 minutes on trisomy disorders, there were a couple paragraphs in the text, and possibly a question about the usual number of chromosome pairs on an exam. I had not, in any case, retained more than a vague notion of what trisomy meant. I knew it was somehow connected to Down's Syndrome, but the full impact of what it meant for my child to have Trisomy 18 didn't hit me when Dr Eberly first verbalized his concern that Mackenzie probably had this anomally.... It hit me about 20 minutes later, when I found the entry for Trisomy 18 in an old copy of the Merck Manual that was at the nurse's station in OB. Thumbing through the pages I came to the entry. I read the whole thing, big words and all. Then I came to the last two lines of the entry, and everything around me sped up while everything inside me came to a dead stop as I read:

More than 50% die within the 1st week; less than 10% are still alive at 1 year. Those who survive have marked developmental delay and disability. No specific treatment is available.

I remember that moment, reading those words, and feeling like what was happening must be happening to someone else.

Suddenly, instantly, all of our plans, all of our dreams, every detail we had so carefully considered, all of it vanished. My child would never march in her highschool band. I'd never see her in a dance recital. She'd never hike a mountain trail, or ride horseback on a beach, or make a snow-angel in the first snow of winter.

Mackenzie's birth had taken place, Michelle was writhing in discomfort as her epidural anesthesia wore off, and I had just learned that the child we had longed and prayed for had this prognosis.

Numb. Alone. Confused. Weak. Stupid.

Since we both worked at South Baldwin, our news was not our own, people from every department had been following our progress. Lab techs, nurses' aides, radiology staff, doctors, physical therapists, respiratory therapists, social workers, scrub techs, housekeepers, maintenance personel, administrators, and marketing specialists, all had an interest in the Lambert baby.

Answered Prayers

Looking back at many of Mackenzie's pictures, it's hard for me to see Trisomy 18. But it wasn't hard at first. I remember long halls leading from the NICU to the elevator. Michelle would lean on me, crying like Niagra Falls every time we'd have to leave. Mackenzie was 3 pounds and 7 ounces at birth, but her esophagus ended in a blind pouch instead of connecting to her stomach, and there was a hole between her trachea and the ascending esophagus, so she couldn't eat.
She had lost down to 2 pounds and 14 ounces before her first surgery. Michelle and I are nurses, but we were still unprepared for everything that was going on. This "tracheo-espohageal atresia" had to be repaired before she could eat.
The surgery involved a thoracotomy, basically, the surgeon deflated her lung, then after the lung was out of the way, he removed the pouch at the end of her descending esophagus, disconnected the ascending esophagus from the trachea, repaired the resulting hole in the trachea, and then anastamosed the descending esophagus to the ascending esophagus. Then he placed a tube in her chest wall next to the incision and reinflated her lung. Then the chest wall incision was closed.
She had 5 wire leads on her trunk monitoring her heart, and respirations, a wire lead to her toe monitoring her oxygenation, a tube in her chest wall keeping her lung expanded, a tube in her mouth, going to her stomach, for feeding. An IV to one arm, and another IV to her scalp. Staff came around every 4 to 6 hours to take blood for testing, and she was being given caffiene to keep her heart beating at an acceptable rate.
Michelle and I would walk down the hall and she would pray, "God, just let me know that she knows she's loved, let me see her smile. Please, let me see her smile. And don't let her die before she knows what home is." They let us take her home from the hospital in the middle of her 4th week there. Because of our nursing backgrounds her doctor felt comfortable releasing her to us, but explained that her prognosis was poor. She weighed a mere 3 pound and 14 ounces. She would not reach 4 pounds until her 4th month, at 5 months she reached 5 pounds, and continued at a pound per month until her gastrostomy tube was placed.
After getting her gastrostomy tube, at around 7 months she started sprouting. She was intubated for the procedure, and develpoed pneumonia. When she came home from the hospital, she required IV antibiotcs. and Feedings that used to take from an hour and a half to two hours, through a nasogastric tube, now could go via pump.

Knowledge Is Power, But Ignorance Is Bliss

When people learn about Mackenzie, they always ask, "Did you know before she was born?"

The answer on one hand is yes, but on the other, no.


We knew that she might be different, we had no idea how she would be different.


But then, we are all different. One of my favorite bumper stickers proclaims:



Always remember you're unique, just like everyone else!




















On September 15th, 2000 at about 2:30 PM, God blessed us forever with a tiny precious visitor who changed our lives completely.







The previous weeks had been exciting, scary, and frustrating. Dr McNally and our midwife, Esther, knew that there were problems, they had said as much.



Esther had followed Michelle's pregnancy from the start. As a Certified Nurse Midwife she had seen Michelle on each of her prenatal OB visits to Dr McNally's office. She had offered encouragement, experience, advice, her private home number, and 24/7 availability. When her patients worry, she does her best to calm their fears. Esther is magnificent at what she does, so is , as it happens, Dr Dennis McNally.




It was Dr McNally who first suggested genetic counseling. In older couples, he explained there are some risks that younger couples seldom have to consider. He recommended genetic counseling, and set up an appointment at the University of South Alabama's Center for Genetic Studies. There were urine tests, blood tests, and ultra-sonography. There were personality profiles, that probed deep into sensitive, and personal ethical issues. Then, there was the recommendation.

Amniocentesis.



Amniocentesis?



Amniocentesis, or amnio, for short, is a relatively common procedure in which a needle is inserted into the mother's abdomen and amniotic fluid is aspirated from the womb into a syringe for testing. Although incidents are few, amniocentesis has certain risks both for the mother and for the unborn child.



The "high tech", 3-D ultrasound had revealed "cysts" on the crichoid plexus of the baby's brain. The geneticist explained that in about 10% of cases, or fewer, these cysts are markers for genetic, or chromosomal anomalies. The only way to be certain is to test amniotic fluid.


The question is: what does one do with the information?



Obviously if the amnio results are negative for a genetic or chromosomal defect, one celebrates.



The dilemma presents itself when the test results come back positive.



The genetic counselor's position in presenting the recommendation for an amniocentesis was that it would provide information needed for making an informed decision to terminate the pregnancy, maintaining that carrying such a pregnancy to term puts the mother at risk.


The counselor it seems is unaware that terminating a pregnancy puts the unborn child at risk, almost every time.


There is also the argument that the results of the amnio will help the couple prepare for the added stresses that having a "special needs" baby presents.


On the other hand, having the knowledge that their unborn infant has a fatal condition that usually ends in miscarriage, or at best only hours or days of life, isn't exactly the way for an excited happy couple to stay excited and happy.



" Trust the LORD with all your heart, and do not rely on your own understanding. In all your ways acknowledge him, and he will make your paths smooth."


Ignorance it is said, is bliss. Every day is a blessing that we exchange for either joy or fear. Every moment is a choice.


Given the possible risks incurred from an amniocentesis, and benefits that the information obtained from the procedure could provide. We carefully considered our options, and when the counselor asked us, we chose bliss.